Iāve been on Tysabri for 3 years. I think anyone looking at this problem should just at the network meta analysis of outcomes from DMTs. You can think through each options risk profile, and then make a reasonable choice for your preferences. consensus.app is a good starting place for evaluating the research quickly.
if anyone needs to discuss iād also be happy to share my experiences if you reach out.
AstraZeneca is doing some really interesting research in this area - cell therapies that reset the immune system to eliminate the dysfunctional cells driving autoimmune disease, and then allow a healthy immune system to rebuild (for diseases like lupus, rheumatoid arthritis, and multiple sclerosis).
There are already clinics where they basically remove your immune system and give you a new one. If you donāt die in the process, you are likely to be cured of MS.
(Any existing damage will remain.)
Currently this is reserved for the most quickly progressing cases but if we can make this safer and cheaper, it might in future be applied as an early stage cure, so people can go on to live healthy lives.
That being said, Astra Zenecas approach does seem much safer, if itās proven to be effective!
Yeah AHSCT is no joke. I mentioned in another comment my wife has MS - diagnosed last year in her mid 40s with thankfully no severe impairment. They discussed AHSCT with us but didnāt recommend it unless another disease modifying treatment didnāt work. Thankfully, Tysabri seems to be working well for her.
My mom passed from leukemia years ago. Or rather, from an infection as she was starting HSCT. Iām sure itās safer than it was 30 years ago, but being without an immune system for a period of time really is still a last resort.
It would be amazing if this type of treatment worked out. MS in particular seems to be a race between technology and your immune system. You hope the next cutting edge treatment is ready by the time the current state of the art stops working for you.
Anokion (now bankrupt) also seemed to have some progress along these lines (link below).
A close family member suffers from MS and is on the more effective but less safe drugs available. They havenāt suffered a relapse since starting them four years ago, but they have been hospitalised twice as a result of side effects.
As we learn more about the relationship between the immune system and various seemingly unrelated diseases the research and understanding has massively increased over the last few years. Iām cautiously optimistic that better treatments arenāt far away. An ancestor was lobotomised for hysteria in the 1960s, before being diagnosed with MS.
https://neurosciencenews.com/gut-immune-responses-ms-trigger...
A landmark study from Keio University (published March 2026 in Science Immunology) has identified a key mechanism linking the gut to MS.
This opens the door to new MS treatments targeting the gut itself ā such as modifying gut bacteria or blocking the abnormal antigen-presenting activity of IECs ā rather than broadly suppressing the immune system
I was part of a team researching MS at a university a while ago. It truly is an endlessly fascinating disease. Most evidence currently points to MS being caused by a combination of Epstein-Barr infection and genetic factors [0,1]. It is hypothesized that Epstein-Barr triggers autoimmunity which results in the prototypical demyelination [2].
- immune reset (sledgehammer that can ācureā diseases like MS but with many side effects and potential complications)
- immune suppression (super effective but with increased risk of infections and blunts vaccines)
- immune redirection (less effective but doesnāt mess up your immune system so badly).
Itās only in the last ~10 years that super effective treatments that can stop ~99% of lesion progression have existed- Ocrevus and Kesimpta. These are anti CD20 disease modifying therapies that destroy all your B cells. The memoir of Dr. Stephen Hauser- āThe Face Laughs While The Brain Criesā- provides a fascinating insight into the development of these treatments over the last ~40 years of his career.
There are active trials of newer types of treatment and a lot of progress is being made in the MS space. It used to be a ādeath sentenceā disease but is quite manageable for many sufferers now. Itās different for every individual and I wish the blog author good health.
The modern treatments are much more effective than anybody had expected, Ocrecus went from something used in the last resort to standard care in less than a decade. I have no issue with it whatsoever though thatās not the case for everyone, and itās now available as a 6 month injection rather than a 8+ hour infusion thankfully. The older drugs were unbelievably bad (blindness, infection, you name it), but Ocrecus has been very tame in comparison. Canāt get vaccinated for Measles (and have 0 immunity) but thatās my only limitation really.
Glad to hear Ocrecus is working for you! My wife was diagnosed last year and has been on Tysabri for about 6 months. So far, so good. Having to go in for a monthly infusion isnāt something she loves, but zero side effects as of yet. Thankfully itās a 1 hour infusion not 8.
Very glad to hear, both Tysabri and Ocrevus tend to have extremely good outlooks from what I've heard from neurologists. I originally received it before it was commonly perscribed and the assumption then was that it would slow disease progression by 50%, for many like myself it has been essentially a complete halt on progression for nearly 10 years.
I'm really glad to hear its going well for you! Her neurologist told us the achievable goal was to stop progression entirely. We were both surprised to hear that. She chose Tysabri because her brother has also had great results with it, and also because it mostly acts to keep your immune system outside the blood-brain barrier, rather than to target specific types of immune cells. Our understanding is you can basically stay on this until it stops being effective or you test positive for JCV exposure, at which point it's on to Ocrevus most likely.
If I can ask, what are you on now, and what happened that took you off of Tysabri? Feel free to not answer - it may be a bit sensitive to ask. I'm just trying to understand this all better since this is very new for my family.
It's fine, ask me anything you'd like! I was diagnosed 10 years ago and had my first (luckily only so far) relapse 11.5 years ago, so I'm very used to this and remember the first years very well. They're scary.
I'm on Kesimpta now, and I like it. It's worked well for me.
I went off of the Tysabri due to issues with getting it paid for: while there was assistance for the medicine itself, there was not assistance for the administration of the medicine, so I moved to a DMT that I could self-administer. We tried Tecfidera first (this was...I want to say 5 or 6ish years ago), and then when the side effects of that proved to be a problem, we decided to start me on Kesimpta. I've been on the Kesimpta for years at this point, and it seems to be working well, though of course it's hard to tell with a DMT since no news is good news.
>First, a request: We do not wish to receive treatment or management advice for MS, including anything related to diet or lifestyle.
This, please. People tend to think that publishing a blog is some sort of "social" activity, a two-way conversation, a way to build/keep a small community. It is not, as a reader you're just expected to consume the content and move on; I hate when people overstep that boundary, jeez.
>How you can help
>We will continue to need your support.
>Iām sure weāre going to need help with things here and there. Running errands, taking care of things around the house, etc.
>Gift cards have been suggested as one way folks can lend a hand
Hey, this is great! Thank you for being very clear on what your needs are, that makes is so much easier to just reach out and help in a way that it wouldn't bother you. As you say gift cards are great because you don't even have to interact with the person sending it (COVID reasons), we can just send it to you, you receive it, if you're busy you don't even have to reply right away.
>We will communicate those requests as needed.
Thank you for the trust you put in us. I will remain pending of this, I can't wait to help.
should add [2021] to title (old article)
Iāve been on Tysabri for 3 years. I think anyone looking at this problem should just at the network meta analysis of outcomes from DMTs. You can think through each options risk profile, and then make a reasonable choice for your preferences. consensus.app is a good starting place for evaluating the research quickly.
if anyone needs to discuss iād also be happy to share my experiences if you reach out.
https://www.astrazeneca.com/what-science-can-do/topics/next-...
AstraZeneca is doing some really interesting research in this area - cell therapies that reset the immune system to eliminate the dysfunctional cells driving autoimmune disease, and then allow a healthy immune system to rebuild (for diseases like lupus, rheumatoid arthritis, and multiple sclerosis).
Today, there is also AHSCT.
There are already clinics where they basically remove your immune system and give you a new one. If you donāt die in the process, you are likely to be cured of MS.
(Any existing damage will remain.)
Currently this is reserved for the most quickly progressing cases but if we can make this safer and cheaper, it might in future be applied as an early stage cure, so people can go on to live healthy lives.
That being said, Astra Zenecas approach does seem much safer, if itās proven to be effective!
Yeah AHSCT is no joke. I mentioned in another comment my wife has MS - diagnosed last year in her mid 40s with thankfully no severe impairment. They discussed AHSCT with us but didnāt recommend it unless another disease modifying treatment didnāt work. Thankfully, Tysabri seems to be working well for her.
My mom passed from leukemia years ago. Or rather, from an infection as she was starting HSCT. Iām sure itās safer than it was 30 years ago, but being without an immune system for a period of time really is still a last resort.
> There are already clinics where they basically remove your immune system and give you a new one. If you donāt die in the process
Of side effects of the process, or of opportunistic diseases during the transition?
The latter is my understanding.
I would not mind remyelination + being on a DMT, heh.
It would be amazing if this type of treatment worked out. MS in particular seems to be a race between technology and your immune system. You hope the next cutting edge treatment is ready by the time the current state of the art stops working for you.
Anokion (now bankrupt) also seemed to have some progress along these lines (link below).
A close family member suffers from MS and is on the more effective but less safe drugs available. They havenāt suffered a relapse since starting them four years ago, but they have been hospitalised twice as a result of side effects.
As we learn more about the relationship between the immune system and various seemingly unrelated diseases the research and understanding has massively increased over the last few years. Iām cautiously optimistic that better treatments arenāt far away. An ancestor was lobotomised for hysteria in the 1960s, before being diagnosed with MS.
https://clinicaltrials.gov/study/NCT04602390
https://neurosciencenews.com/gut-immune-responses-ms-trigger... A landmark study from Keio University (published March 2026 in Science Immunology) has identified a key mechanism linking the gut to MS. This opens the door to new MS treatments targeting the gut itself ā such as modifying gut bacteria or blocking the abnormal antigen-presenting activity of IECs ā rather than broadly suppressing the immune system
I was part of a team researching MS at a university a while ago. It truly is an endlessly fascinating disease. Most evidence currently points to MS being caused by a combination of Epstein-Barr infection and genetic factors [0,1]. It is hypothesized that Epstein-Barr triggers autoimmunity which results in the prototypical demyelination [2].
[0]: https://www.science.org/doi/10.1126/science.abj8222
[1]: https://www.pnas.org/doi/10.1073/pnas.2424986122
[2]: https://www.nature.com/articles/s41586-022-04432-7
MS treatments tend to take 3 forms:
- immune reset (sledgehammer that can ācureā diseases like MS but with many side effects and potential complications)
- immune suppression (super effective but with increased risk of infections and blunts vaccines)
- immune redirection (less effective but doesnāt mess up your immune system so badly).
Itās only in the last ~10 years that super effective treatments that can stop ~99% of lesion progression have existed- Ocrevus and Kesimpta. These are anti CD20 disease modifying therapies that destroy all your B cells. The memoir of Dr. Stephen Hauser- āThe Face Laughs While The Brain Criesā- provides a fascinating insight into the development of these treatments over the last ~40 years of his career.
There are active trials of newer types of treatment and a lot of progress is being made in the MS space. It used to be a ādeath sentenceā disease but is quite manageable for many sufferers now. Itās different for every individual and I wish the blog author good health.
Dead URL
Archive link: https://web.archive.org/web/20260120080248/https://subfictio...
Worked for me.
Hugged to death.
MS sucks. Thereās varying degrees, though. I know folks that have it now, and ones that died from it.
Some of the treatments arenāt very nice. I knew one chap that was on Interferon, for life.
The modern treatments are much more effective than anybody had expected, Ocrecus went from something used in the last resort to standard care in less than a decade. I have no issue with it whatsoever though thatās not the case for everyone, and itās now available as a 6 month injection rather than a 8+ hour infusion thankfully. The older drugs were unbelievably bad (blindness, infection, you name it), but Ocrecus has been very tame in comparison. Canāt get vaccinated for Measles (and have 0 immunity) but thatās my only limitation really.
Glad to hear Ocrecus is working for you! My wife was diagnosed last year and has been on Tysabri for about 6 months. So far, so good. Having to go in for a monthly infusion isnāt something she loves, but zero side effects as of yet. Thankfully itās a 1 hour infusion not 8.
Very glad to hear, both Tysabri and Ocrevus tend to have extremely good outlooks from what I've heard from neurologists. I originally received it before it was commonly perscribed and the assumption then was that it would slow disease progression by 50%, for many like myself it has been essentially a complete halt on progression for nearly 10 years.
I'm really glad to hear its going well for you! Her neurologist told us the achievable goal was to stop progression entirely. We were both surprised to hear that. She chose Tysabri because her brother has also had great results with it, and also because it mostly acts to keep your immune system outside the blood-brain barrier, rather than to target specific types of immune cells. Our understanding is you can basically stay on this until it stops being effective or you test positive for JCV exposure, at which point it's on to Ocrevus most likely.
I was on Tysabri for a while and I always felt the infusion time was a bit calming. Forced me to step out of life and relax a little bit.
If I can ask, what are you on now, and what happened that took you off of Tysabri? Feel free to not answer - it may be a bit sensitive to ask. I'm just trying to understand this all better since this is very new for my family.
It's fine, ask me anything you'd like! I was diagnosed 10 years ago and had my first (luckily only so far) relapse 11.5 years ago, so I'm very used to this and remember the first years very well. They're scary.
I'm on Kesimpta now, and I like it. It's worked well for me.
I went off of the Tysabri due to issues with getting it paid for: while there was assistance for the medicine itself, there was not assistance for the administration of the medicine, so I moved to a DMT that I could self-administer. We tried Tecfidera first (this was...I want to say 5 or 6ish years ago), and then when the side effects of that proved to be a problem, we decided to start me on Kesimpta. I've been on the Kesimpta for years at this point, and it seems to be working well, though of course it's hard to tell with a DMT since no news is good news.
>First, a request: We do not wish to receive treatment or management advice for MS, including anything related to diet or lifestyle.
This, please. People tend to think that publishing a blog is some sort of "social" activity, a two-way conversation, a way to build/keep a small community. It is not, as a reader you're just expected to consume the content and move on; I hate when people overstep that boundary, jeez.
>How you can help
>We will continue to need your support.
>Iām sure weāre going to need help with things here and there. Running errands, taking care of things around the house, etc.
>Gift cards have been suggested as one way folks can lend a hand
Hey, this is great! Thank you for being very clear on what your needs are, that makes is so much easier to just reach out and help in a way that it wouldn't bother you. As you say gift cards are great because you don't even have to interact with the person sending it (COVID reasons), we can just send it to you, you receive it, if you're busy you don't even have to reply right away.
>We will communicate those requests as needed.
Thank you for the trust you put in us. I will remain pending of this, I can't wait to help.